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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

  • RSD of the Ear?!

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    Old 06-28-2004, 01:25 PM   #46
    mirn
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    Exclamation Re: RSD of the Ear?!

    Well i had the infiltration of the ear done on Friday, June 25th and I guess i feel less pain but just like you people warned me about, it brought bad flushing to the ear. Even though the difference now is that i feel less pain during the flushing. Michelle, what treatment does your doctor have you on, and is anything helping? How long does this flushing following the steroid injection last? Anything I can do to control/stop it?

     
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    Old 06-28-2004, 03:05 PM   #47
    Michelle W
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    Re: RSD of the Ear?!

    I am sorry to hear that you are experiencing flushing due to your treatment. I hope it subsides soon. I have no experience with steroids, because none of my treatment has included that regimen. I hope someone else will offer some suggestions to you.

    I am only seeing a neurologist right now. My pain management doctor dismissed me last Thursday. I guess I did not respond well to the nerve block, so he does not think my pain is sympathetically maintained. He told me he has no other treatment options to offer me. I am confused as I thought pain managment doctors helped you when no one else can help you. I was so stunned I almost started crying.

    The only treatment I am on is Neurontin 300 mg three capsules four times a day and Keppra 500 mg two caplets twice a day. I have some Ultracet to take as needed. I don't take them too often, but I probably will start taking them more often as I am about worn out with this pain. The Neurontin and Keppra help with the pain, but I still have pain all the time. I am never pain free. Is this what you also experience-continued pain? My pain is just at different levels during the day.

    I have been home five years raising a family and now that I want to go back to work I feel unable to due to pain. Are you able to work? I wonder what other people are able to do when they are in constant pain. I am about at the point of just forgetting ever working again and hoping that my husband can continue to work and support both of us. I don't know what else to do.

    I am thinking of going to Mayo Clinic later this year if my situation does not improve despite my pain managment doctor telling me if he couldn't figure it out he doubted they could. No one is giving me any hope of my situation improving. It is discouraging.

     
    Old 06-29-2004, 07:42 PM   #48
    mirn
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    Re: RSD of the Ear?!

    Michelle,

    Thanks for the concern, now the flushing seems to be mostly in the morning probably from accidentally rolling over on the ear during the night. Don't give up on the treatment, i think it took doctors over 2 years to even tell me I have RSD, so nothing will happen overnight as much as we want to, i tried so many drugs, and so many different treatments and I'm still not really getting anywhere but i know something somewhere will help. As far as working, i'm lucky that I work out of my home on the computer so when i'm hurting a lot, i can just quit. But yeah it's really hard to focus on specific tasks that require a lot of thought because of the constant pain and side effects from the medications. Yes i experience constant pain just like you. I'm glad your husband can help you out. And i admire people with RSD for dealing with pain.

    Can anyone answer my questions though: anything that help with the flushing (except propranolol which i'm on)? How long does this flushing following the steroid injection last? Anything I can do to control/stop it?

     
    Old 07-02-2004, 05:21 AM   #49
    JOSH12
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    Re: RSD of the Ear?!

    I'd read that injections directly into the RSD affected site are generally not recommended. Did your doctor explain why this was recommended? -Was this doctor an anesthesiologist or neurologist?

    For flushing have you tried clonidine (alpha2-adrenergic agonist) tends to be significantly more effective than propranolol (beta-adrenergic blocker) & also utilized more for RSD/neuropathic pain.

    Let us know,

     
    Old 07-03-2004, 10:01 AM   #50
    Michelle W
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    Re: RSD of the Ear?!

    Mirn,

    I was wondering if loud noises bother your ear affected with RSD? I have a hard time going to the movies due to the volume level.

    Thanks,
    Michelle

     
    Old 07-09-2004, 12:20 AM   #51
    mirn
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    Re: RSD of the Ear?!

    JOSHDR,

    I will ask my PM on July 13th when I see her to see why she recommended the injections directly into the RSD affected site which was my ear. The doctor was a PM but there also was a anesthesiologist in the surgery room.

    Michelle,

    I'm all right going to the movies, but loud sounds are a bit more hurtful to the ear.

     
    Old 07-09-2004, 12:06 PM   #52
    Michelle W
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    Re: RSD of the Ear?!

    I have decided to get a second opinion on my situation. I am going to Mayo Clinic in MN in August to see a specialist. I want to see what a fresh set of eyes has to say about my past surgery and current situation.

     
    Old 07-14-2004, 04:37 PM   #53
    mirn
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    Lightbulb Re: RSD of the Ear?!

    JOSHDR,

    I talked with my pain doctor that did the steroid injection yesterday, but i didn't get a good feel on why she recommended it. I also asked her about changing to clonidine from propranolol but she said she doesn't like to perscribe it to young people (i'm 22) because it lowers the blood measure too much... So she recommended I stay on the propranolol


    Michelle, keep me updated on your situation and treatment. Since i still have most of the pain, she said I should get a spinal cord stimulator put in, i'm seeing a doctor that would do that procedure in 9 days. My other ear is getting more sensitive, and she said that the spinal cord stimulator is about the only thing that would keep RSD from spreading. Is that true? What are risks associated with having a spinal cord stimulator put in?

     
    Old 07-14-2004, 04:47 PM   #54
    Michelle W
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    Re: RSD of the Ear?!

    Mirn,

    I know no one who has had a spinal stimulator put in, but I would definitely get a second and possible third opinion. I know with any surgery you always have the chance of infection. I don't go to Mayo for another month, but I will let you know what I figure out. You might try posting on like a back injury board. I have read where people with back injurys often get spinal stimulators.

     
    Old 07-15-2004, 01:46 PM   #55
    mirn
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    Angry Very Worried about Spreading

    Ok, i'm starting to get really worried, The upper neck area around the ear is starting to get more sensitive to the touch, and feels sore when i turn my neck. I don't know if this is from the steroid injection or if this is RSD spreading, how can I tell?

     
    Old 07-16-2004, 09:27 AM   #56
    JOSH12
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    Re: RSD of the Ear?!

    Mirn, I would consider getting another opinion from a board certified pain management specialist-either neurologist or anesthesiologist. What are you currently taking?

     
    Old 07-16-2004, 02:56 PM   #57
    mirn
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    Re: RSD of the Ear?!

    taking the following:

    amoxicillin 500mg X 2 a day
    amitriptyline 150mg 1-2 X a day (for pain and rsd)
    propranolol 80mg X 2 day (to limit flushing)
    ambien10mg X 1 day for help with sleep

    And yes, i'll get another opinion(s) from more doctors

     
    Old 10-11-2004, 10:44 AM   #58
    mirn1
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    Re: RSD of the Ear?!

    Michelle,

    Hi, it's mirn. I was wondering what the doctors at Mayo Clinic in MN told you. Do you in fact have RSD of your ear? Any details, advice would be appreciated. I'm trying HBot therapy right now, and went to Corpus Christi for over a month to see Dr. Rhodes and try the STS machine, but i haven't received much relief.

    Thanks

     
    Old 10-11-2004, 11:56 AM   #59
    Michelle W
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    Re: RSD of the Ear?!

    Hi Mirn,

    I am sorry to hear you are not experiencing much relief with your new treatment. I am basically in the same boat. I am continuing to take the high dose of Neurontin and Keppra for my pain.

    I did not learn much from my trip to Mayo in regards to new treatment. Mayo's opinion was that my pain is a result of my surgery. I have nerve damage as a result of the surgery. I did not get the feeling from them that it was RSD. I thought too that maybe my surgery was not done correctly, but it looks okay to the doctor's at Mayo. Mayo did not think I should take any different type of medication.

    Right now my only hope is that maybe my nerve will heal, but it has been 19 months and I think chances are slim.

    If there is anything else I can help you with please let me know. We both are in a bad situation.

     
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